HACKENSACK, N.J., Sept. 19, 2019 / — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of their renowned Certified Duchenne Care Center Program (CDCCP) with the program’s first Adult Certified Duchenne Care Center, the clinic at University of Missouri Health Care (MU Health Care). This is an exciting next step for PPMD’s CDCCP as more and more teens and adults living with Duchenne transition from pediatric care and look for quality clinicians and resources that address their needs as they age.
Kathi Kinnett, MSN, APRN, PPMD’s Senior Vice President of Clinical Care and director of PPMD’s Certified Duchenne Care Center Program says that the addition of adult clinic certification was a necessary next step: “Improvements in Duchenne care, specifically in the areas of cardiac and pulmonary care, have thankfully led to a growing population of adults living with Duchenne and PPMD is extraordinarily proud of the role we have played in emphasizing these areas of care. But because Duchenne has historically been a pediatric diagnosis, there is a lack of adult medical providers who are familiar with the subspecialty care and management necessary for our adult population. PPMD has certified 26 Certified Duchenne Care Centers capable of providing comprehensive care and services to pediatric Duchenne patients. Some of these certified centers are able to offer at least some aspects of care to adult patients, but none have been certified strictly as an Adult Certified Duchenne Care Center. Using the Center for Disease Control’s updated Duchenne Care Considerations as a guideline, our certification committee was able to begin developing requirements for adult care leading to today’s announcement of University of Missouri Health Care as our first Adult Certified Duchenne Care Center.”
University of Missouri Health Care was the first center to seek certification as an adult-only CDCC. Because the needs of adults living with Duchenne are different from the needs of pediatric patients, the Certification Committee worked with Raghav Govindarajan, MD, director of MU Health Care’s muscular dystrophy clinic and an assistant professor of clinical neurology at the MU School of Medicine to develop and refine requirements of adult certification. Once the requirements were developed, members of the certification committee visited the MU Health Care neuromuscular center, interviewed providers, performed a review of patient records, and visited their clinic. Throughout the experience, issues and topics pertinent to this population were discussed, requirements were edited, and suggestions included. Final review by the CDCC Certification Committee, which includes several parents and one adult living with Duchenne, recommended certification. The result is a robust application and evaluation process going forward for sites applying for Adult CDCC Certification.
“Patients with Duchenne are living longer, but most of the care and research is focused on pediatric patients,” said Dr. Govindarajan. “MU Health Care is able provide older Duchenne patients the comprehensive care they deserve because of our expertise, technology and collaborative environment. We are particularly thankful to our colleagues in physical medicine and rehabilitation, cardiology, pulmonology, palliative care, endocrine and therapy services. We look forward to being a role model for other adult centers seeking certification.”
PPMD’s Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification means centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, and comply with standards in clinical care that were established by the CDC Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
Kinnett says that adding centers focused on adult care broadens the reach of this 5-year-old program and believes other clinics will follow Missouri’s lead: “PPMD and the CDCC Certification Committee are incredibly excited about the ability to offer this important area of care. We expect that, after the certification of the University of Missouri, many other centers will apply as well, including those centers that are providing adult care but are certified as pediatric CDCCs. Over the next few years, PPMD hopes to build a network of adult care as robust as the network of pediatric CDCCs that have been developed. Adults with Duchenne deserve this.”